Presentations from the EURORDIS Membership Meeting 2016 Edinburgh
General Assembly
Workshop 1: European Reference Networks (ERN) and ePAGs
Speaker - Matt Johnson
Workshop 2: Rareconnect
Speakers - Robert Pleticha, Denis Costello & Michael Brudno
Workshop 3: INNOVCare, Rare Barometer & Advocacy
Speakers - Raquel Castro, Sandra Courbier, Dorica Dan, Stephanie Joker Nielsen & Annette Scoppetta
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Advoacy took kit to integrate Rare Diseases into social services and policies, Raquel Castro, Social Policy Senior Manager, EURORDIS

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INNOVCARE & Rare Barometer survey on the daily needs of people living with a rare disease and their families, Sandra Courbier

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Advocate for health services to play an active role: European Expert Group Recommendations, Dorica Dan, Romanian National Alliance for Rare Disease

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INNOVCare Project, Raquel Castro

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Navigators help PLWRD manage, Stephanie Joker Nielsen, Project Manager, Rare Diseases Denmark

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Social Innovation, Annette Scoppetta

Workshop 4: ERNs, Research & Clinical Guidelines
Speakers - Domenica Taruscio, Karen Ritchie, Jenny Harbour, Lorna Thompson, Dr. Avril Kennan & SIlvia van Breukelan
Page created: 27/05/2016
Page last updated: 27/03/2018